March 2020 Newsletter

During your busy day, do you think about all that your brain does to get you through it? It controls everything you say, feel, and do. Through your brain, you experience emotion. It keeps you alive through breathing, circulation and digestion. It controls your hormones, and the immune system. It’s responsible for your urges, ideas and the way you think, even the reason why on some occasions, you don’t think, but act instead.

This incredible organ of soft tissue, weighing less than three pounds contained in our skull is largely taken for granted. Yet it functions as a primary receiver, organizer, and distributor of all information for the body. We usually don’t think about all the brain does, until an injury occurs or malfunctions.

Washington, DC reports every 11 seconds someone in the US sustains a brain injury.

There are two basic types of brain injury:

Traumatic Brain Injury (TBI) is caused by an external force, a blow or jolt to the head. Common causes include motor vehicle crashes, falls, sports injuries, assaults and gunshot wound to the head. Injuries range from mild concussions to severe permanent brain damage.

Acquired brain injury (ABI) is caused by internal factors, such as a lack of oxygen supply due to near drowning or heart attack. It can also include infectious diseases, a brain tumor, exposure to toxins, aneurysm or stroke. The brain injury will range from mild to severe.

Remember you only get one brain. Unlike the liver, kidney or heart, no human brain transplant has ever been done. Your brain can’t be replaced like a hip, knee or shoulder. Nor fixed like a broken bone.

Since 1991, we enjoy many friendships of all types of brain injured people with varying degrees of damage. We gain valuable information through meeting with others in like situations. I’m grateful for the people we meet in our support groups. Their encouragement helps me meet our challenges. The experience and knowledge shared is both beneficial and uplifting.

My hope for this newsletter is to share information about organizations which help people with a brain injury and their caregivers. I’ve included information relating to epilepsy because TBI and ABI can cause epilepsy. My husband, Mark had his first seizure seven years after the car accident. He was diagnosed with epilepsy as a result of his brain injury.

In case it’s impossible for you to get out, or you don’t live in this area, I’ve also included links to useful and inspiring websites.

If you have an activity, announcements or other information you’d like shared in this newsletter, please add them in the comments or email.


FREE SUPPORT GROUPS FOR STROKE AND BRAIN INJURY SURVIVORS AND CAREGIVERS

March 5, 2020Utah Valley Aphasia Choir meets at 6-6:45pm on the 1st Thursday of the month, prior to the support group at the BYU Speech and Language Clinic. It’s for all brain injury, and stroke survivors, caregivers, family, and friends. Come and enjoy the power of music and friendship together. Everyone interested is welcome to join.

March 5, 2020Utah Valley Brain Injury Support Group meets at 7-8:30 p.m. on the 1st Thursday monthly at the BYU Speech and Language Clinic, Room #177. Address: 1190 North 900 East, Provo, UT 84060. Join us for an Adaptive Yoga Night, taught by Abigail Atkinson. For questions email byutbigroup@gmial.com or call (801)422-9132.

March 10, 2020 – Brain Injury Alliance Support Group for Adults, 6-8 p.m. meets every 2nd Tuesday monthly at Sanderson Community Deaf Center, 5709 South 1500 West, SLC, UT 84123. This social group is for caregivers and survivors. Come join us for dinner and games. Bring your favorite dessert to share if you’d like. For more information, please call Jennifer (801)386-2195, or Beth (801)585-5511.

March 19, 2020IMC Caregivers and Survivors Education and Support Groups, meets at 7 – 8 p.m. every 3rd Thursday monthly at Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT 84107, building 1. This month survivors & caregivers willmeet together on the 9th floor Neuroscience Conference Room. Natalie Caldwell, MS,CCC-SLP is presenting Ground Rules for Communication with Those You Love. For more information, please call (801)314-2086 or email Emily Redd at emily.redd@imail.org.

March 24, 2020University of Utah Brain Injury Support Group meets at 6:15 – 7:15 p.m. every 4th Tuesday monthly at Sugarhouse Health Center, 1280 E. Stringham Avenue, 3rd floor conference room, SLC, UT 84106. This month they are hosting Molli Baker from Molli Dogs, a service dog training academy. She will be talking about therapy, emotional support, and service animals. For more information please call (801)581-2221 or email Kelsi.Schiltz@hsc.utah.edu.


FREE WEEKLY GROUPS INTERMOUNTAIN HEALTH CARE NEURO THERAPY in Murray, Utah

Aphasia Talking Practice Group – Meets every Tuesday, Noon-1 p.m. at 5770 South 250 East #G50

Meditation Group – Meets every Wednesday, 3 p.m. at 5770 South 250 East Cafeteria Conference Room

Adaptive Yoga – Meets every Wednesday, 4 p.m. at 5770 South 250 East, Gym

Cognitive Skills Group – Meets every Thursday Noon-1 p.m. at 5770 South 250 East #G50

Contact: Emily Redd at Emily.redd@imail.org


FREE EPILEPSY SUPPORT GROUPS FOR THOSE EFFECTED BY SEIZURES

Together we share coping strategies, provide encouragement, comfort and advice from people with common experiences.

For more information contact Margo at (801)455-6089 or Utah@efa

March 11, 2020 – Provo Epilepsy Group for All, meets at 7:00 – 8:15 pm on the 2nd Wednesday at the Provo City Library, 555 N. University Ave., Provo, UT.

March 12, 2020 – IMC Epilepsy Group for All, meets at 7:00 – 8:30 p.m. on the 2nd Thursday at the Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT Bldg. 6, 1st floor – CR2 in the Doty Education Center.

March 18, 2020 – SLC Epilepsy Group for All, meets at 6:30 – 8:30 p.m. on the 3rd Wednesday at the SLC Main Library 200 E. 400 S., SLC, UT (3rd floor conference room).


HELPFUL WEBSITES:

http://www.caregiver.org (online webinars for caregivers)

http://www.braininjury.com (medical, legal, information resource)

http://www.abta.org (brain tumor education and information)

http://www.cdc.gov/ncipc/tbi (brain injury facts, programs, education)

http://www.ninds.nih.gov/Disorders/all-disorders (education for brain injury, stroke and other neurological disorders)

http://www.msktc.org/tbi (TBI Model Systems Knowledge Translation Center) national leaders in TBI research and patient care.

http://www.nationalmssociety.org/Resources-Support (resource for those with MS)

http://www.epilepsy.com/utah and/or http://www.epilepsy.com (seizure education and support by state or national)

https://biau.org (resource for those with brain injury)

http://www.brainline.org (preventing, treating and living with TBI)

http://www.uilc.org (Utah Independent Living Center is a resource center which enhances independence of persons with disabilities)


ACTIVITIES TO DO WEBSITES:

https://store.usgs.gov/access-pass (free pass to National Parks & Federal Land Agency areas)

https://twilightinsight.wordpress.com/hobbies/hobbies-or-healing-the-brain/tbi-and-selecting-a-hobby (select a hobby – ideas especially for TBI survivors)

http://wanderookie.com/blog/2015/07/27/12-beautiful-wheelchair-accessible-trails-in-utah
(wheelchair accessible trails in Utah)

wasatchadaptivesports.org (Wasatch Adaptive Sports)

http://www.discovernac.org (National Ability Center)

https://healthcare.utah.edu/rehab/support-services/trails.php (University of Utah TRAILS Program)

https://www.meetup.com (meet up groups)


SHARING WEBSITES:

http://www.brainline.org/abbymaslin (blog about loving and learning after TBI)

https://www.loveyourbrain.com (Kevin Pearce’s nonprofit organization that improves the quality of life of people affected by traumatic brain injury)

 Two of my favorite websites. What are yours?


Thank you for reading. I hope you found the information helpful and will follow this website via email to receive notifications of every new post. The “Follow” button is located at the beginning of the newsletter. However, if you want to subscribe only to a monthly newsletter, I can add you to the newsletter only list. For this option, please email Barbara@UnitingCaregivers.com.


Alison Delgado’s Story

Friday, Mark and I attended the Brain Injury Alliance Conference, which we enjoy every year we are able to attend. It increases our knowledge and awareness of those affected by the injury. The keynote speaker, Dr. Alison Delgado, was the perfect choice to kick off this year’s theme, From Surviving to Thriving. After all she completed medical school, won the Flying Pig Marathon, ran the 2013 Boston Marathon and has reached the summit of two of Colorado’s 14,000-foot peaks.

Dr. Alison Delgado has also climbed a mountain of a different kind. As a young pediatric resident, she was hit by a car while riding her bicycle fifteen miles from her Cincinnati home on October 16, 2010. This caused serious physical and neurological injuries. Her husband of only five months, Dr. Tim Delgado, who was working as an emergency department resident at the University Hospital and trained as a flight physician, arrived via Air Care. He was prepared to take care of patients in helicopters during the precious minutes between life and death, but never dreamed he’d be called to save his wife. Tim was called to provide assistance to a “Jane Doe cyclist in her 20s” during her transport to University’s trauma center. When Tim arrived and realized that the accident victim was his wife, a second helicopter and physician were summoned.

Alison, who was wearing a bicycle helmet, did not suffer the kind of traumatic brain injury normally seen in bicycle accidents. Although she suffered numerous fractures to her neck and body, her skull was intact. Inside her brain, however, the impact created significant problems. It caused a blood vessel to tear and spill blood into the space around her brain, a subarachnoid hemorrhage. The injury either led to the development of a dangerous aneurysm—a bulge in the blood vessel wall—or aggravated an existing aneurysm. The discovery of a second aneurysm on the other side of her brain suggested that a genetic abnormality had elevated her risk of developing aneurysms.

During a series of procedures while at Mayfield Clinic, the neurosurgical specialists worked to treat the aneurysm and stop the bleeding. But the aneurysm ruptured a second time, four days after Alison had returned home from the center. The set back resulted in a seizure that forced her husband to insert the breathing tube. That incident put her back in the hospital for three weeks. Dr. Mario Zuccarello, a renowned cerebrovascular surgeon, neutralized the aneurysm by rerouting the blood flow around the damaged artery and then shut off blood flow to the aneurysm with a clip.

With the worst behind her and twelve surgeries to her brain, chest and jaw, Alison was able to focus on rehabilitation and recovery. She progressed rapidly from her lowest point, when she had trouble remembering Tim’s name. They played Uno, Life and Scattergories. Using an iPad, Tim showed her photos and prompted her to search her memory for the words to describe them. Certain words, including “helicopter,” proved elusive at first. Step by hard-earned step and word by remembered word, Alison worked hard to regain her abilities. Recovery also meant daily workouts at the gym on the elliptical, weight lifting and exercises to improve her balance. At first Alison had to hold Tim’s hand to do lunges; eventually she could do them with weights.

story.delgados.workout.cnn

The Delgados exercised every day, working to restore Alison’s strength. Credit image: http://www.cnn.com/2011/HEALTH/03/05/married.doctors.emergency/index.html

Reading came slowly at first, then more and more quickly. Sometimes Alison would have trouble finding the words she wanted to say, but her improvement and determination never ceased. Her speech therapist asked her to read a medical article and then write about it. She began attending rounds at Cincinnati Children’s Hospital and by February 2011, only four months after her initial injury, she had presented two cases at bedside rounds. 

Dr. Zuccarello wouldn’t let Alison run again until after she had recovered from the surgical clipping of the second aneurysm, which he performed in early March 2011. “We are focused on one goal: getting her back to work and to where she feels normal,” Tim said. He was her number 1 cheerleader and kept her motivated. In April, Alison began working part-time and in May, she was back full-time. Alison had to make up extra time in residency, but finished in December 2012.

Alison now lives in Utah and works full-time at Summit Clinic in Park City, specializing in Pediatrics. Tim, now works in Salt Lake, specializing in Emergency Medicine. He not only saved her life twice, he took a three-month leave to care for her. He says, “There are 54 peaks in Colorado over 14,000 feet, she wants to get the last 52.”

What an inspiration illustrating surviving to thriving. I imagine the Delgado’s are awesome doctors given their personal experience of two near fatal injuries and recovery. There’s much to gain from survivors and those who support and encourage them in their recovery process. Every survivor is unique and responds to treatment in different ways. Their results are influenced by many factors, but I love to hear and read about their challenges and successes. I appreciate Alison, for sharing her story at the wonderful and worthwhile 2015 Annual Family and Professionals Conference.

Reference: http://www.mayfieldclinic.com/MC_hope/Story_alison.htm#.Vi0ssCu94dx

To read more about the amazing doctors story go to:

http://www.nydailynews.com/life-style/health/doctor-saves-wife-life-dr-tim-delgado-told-today-show-horrifying-accident-article-1.121267

http://www.cnn.com/2011/HEALTH/03/05/married.doctors.emergency/index.html